Adytum
Region: US
Friday 08 May 2026 02:10:01 GMT
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a mess :
EDS is such a strange mysterious disorder. Lots of comorbidities that go along with it that don’t make sense. Like most of us being neurodivergent, and HSP. It’s very strange.
2026-07-25 23:52:47
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Scarlet Blade :
As an hEDS patient, I just wish I'd meet with a doctor that actually knows what EDS is 🙃
2026-05-08 17:09:26
2190
Lexa📚 :
OK, I have EDS. I think it's an interesting question to consider why, like hEDS also causes significant physiological stress which lights up those immune pathways, it's a cascade. A causes B, C, D, and E
2026-07-26 16:04:17
0
Melissa :
I can’t wait for someone to figure out why GLP1 makes such a huge improvement for all or most of these conditions.
2026-05-09 02:58:55
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Lark :
my doctorate in my own health is about to get a new specialty
2026-05-08 03:39:26
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Kat :
I was already Dx but can someone tell me why my lab work keeps coming back basically saying I’m the picture of health? Like I don’t care what that paper is telling you, I AM TELLING YOU I FEEL LIKE 💩! There’s no way I have no inflammation in my body. There’s no way my liver and kidneys and m
2026-05-08 07:38:45
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Elo | Political Science :
Anyone else here with hEDS also have HG in pregnancy?!?
2026-05-09 19:38:44
40
Vincent :
could it be that hEDS is a result of our immune system instead of ligament growth? 🤔 it would make sense why a lot of people end up with MCAS. reversing the cause and effect.
2026-05-08 20:47:19
270
MadWeeBird :
Please be careful with the way you word these things - HEDS IS a connective tissue disorder. Collagen is only one part of the connective tissue system and connective tissue makes up a huge proportion of our tissues, including heart, brain, muscle, and vascular tissues, blood, hormonal structures and more. Collagen =/= all connective tissue, it IS a connective tissue disorder, it is NOT a collagen disorder.
2026-05-08 19:57:06
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samiam867867 :
I’m confused because I was diagnosed by a geneticist over a decade ago, and other than the piece you said about collagen, the geneticist told me all of that. He even diagnosed me before measuring the extension in my joints and check my flexibility. The hypermobility was basically an afterthought— also why I hate that it was renamed hEDS.
2026-05-08 03:12:27
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💖EmpressTigerlilly💎🎀 :
I have extra myelin in all of my neurons. It's neurological. No one wants to address that.
2026-05-08 12:31:49
20
alex (i'm a girl btw) :
why is this the first time they've looked at it without bias...
2026-05-08 07:55:16
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Amy Pond :
also good to note that blood is considered in itself a connective tissue
2026-05-08 05:56:37
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NazUmmTrio :
Shout out to people in the UK with this hEDS ! Can anyone provide us with information on where to go for diagnosis and help?
2026-05-09 13:31:09
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karin 🌈 :
29 is a very low number of participants for a clear definition of scientific evidence
2026-05-08 19:53:26
26
Bethany :
Interesting!! I am dx hEDS and collecting auto immune disorders. Most interestingly APS. I wonder how common APS is in hEDS population since it’s so rare otherwise.
2026-05-08 13:02:52
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The Zebra LMT :
Definitely sounds like it makes sense, Definitely needs repeating.
2026-05-08 22:37:57
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rootandthreadwellness :
The immune system, fascia, nervous system, lymph etc are all interconnected. Mast cells exist within the fascia
2026-05-10 02:19:30
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amber jean :
Another issue, in the UK, there are limits of the kinds of labs that can be ordered by a GP, and restrictions get tighter, you see an actual doctor less and less, and referrals are now harder to get. So frustrating
2026-05-09 13:36:08
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I’m actually called Mildred :
We know. We just wish the medical bodies did.
2026-05-08 20:26:49
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Angela Whitesides :
ohh. my daughter's complement cascade is overactive and her doctors are acting like it's nothing.
2026-05-19 16:08:31
5
@Prin¢essDurttbagg :
This really makes me wonder. If this is a basic amino acid, like basic building block problem, which to some degree, I realize is asking chicken or egg. But it's gotta go deeper than that
2026-05-08 13:23:10
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Ray & Stormi 🏳️🌈| dog nerd :
Wish they would study other types because we do have similar co morbities like Dysautonomia
2026-05-08 13:24:01
107
PhOenix625 :
That actually makes sense as that lines up with my blood work. Even tcell dysregulation
2026-05-08 03:10:03
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jessie :
I saw Sarah Schauer (I think, forgive if I misquote) say from her research that blood TECHNICALLY IS connective tissue and a lot of people/the literature doesn’t understand that
2026-05-10 14:16:40
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